Desperate. Please help me? X

Hi I’m feeling pretty desperate. Please bare with me and possibly give me your views?
My first symptoms (not that I realised at the time). Were around 8 months ago. Every now and then I felt like my voice seemed loud in my head as if I had headphones on. I left it for a month or so but thought I maybe should see dr as maybe I needed my ears syringing. Dr said my ears were clear but it could possibly be fluid behind my eardrum. Advised me to steam inhalation and it’d go away on its own. At Christmas I started to have dizzy spells and feel sinus pressure every now and then. I saw the dr who thought it was Labyrinthis and gave me stemitil to take as and when. It seemed to go away and I felt relieved that it’d gone. 3 weeks ago the dizziness was starting everyday as well as feeling off balance, getting head pressure, mainly in top of my head. Sinus pressure in my face and nausea. I’ve had to stop work and feel my life has stopped. MRI due this week but drs just don’t know what’s happening. They think it’s possibly my ears. ENT say it’s not my ears because my hearing test was acceptable and on that day I didn’t have a nystagmus present.( I always have one when drs see me.) Do you think it’s possible I have migraine associated vertigo? Sorry for long post x

Hi Sjr1969,
Sorry you are feeling so desperate. I think many of us on this forum have been in the same boat as you – basically searching for answers and sometimes going from doctor to doctor without a firm diagnosis or to be told there is nothing wrong with us. It is incredibly frustrating! May I suggest finding a neurologist or neuro-otologist in your area who specializes in migraine? ENTs often have no idea about the extent of migraine symptoms, so you may get no joy from them. This board contains lots of info about specialists around the world, and if you can’t find one in your area listed here, you can always start a thread asking for recommendations for your area. Which city/country do you live in?
Now as to your symptoms, all your current symptoms I have experienced with vestibular migraine, so they certainly can be down to migraine. Have a look around this board – there is a wealth of info on managing this condition.
Good luck!

Thankyou for your reply. I am in Lincolnshire. I already have a neurology appointment booked. Sadly not until the middle of May.

That’s is great that you are booked in already. I know the two-month wait can seem like forever, but I hope your visit will make up for that. In the meantime, it’s worth taking a look at the Survival Guide that Scott has posted on the forum (paste the following link into your browser to find it) viewtopic.php?f=1&t=2392#p19483

This gives fantastic info about potential triggers, suggested lifestyle modifications and migraine preventative medications. Do you have a good gp? If so, you could always talk to them about getting you onto a migraine med before you see your specialist. That way you’d have a bit of a head start before your appointment in May. The migraine meds can take a bit of trial and error to find one that fits, but in my opinion the sooner you start the better. They can also take a few weeks/months to titrate up to the right dose and see positive results, but again, in my experience, it’s worth the effort to get relief.
There are several papers posted on this site by UK specialist Dr Nicholas Silver. I highly recommend reading them as he explains chronic migraine very well, as well as all the effects you can feel from the condition. I think having a good understanding of what this condition is helps with acceptance and healing, and reduces the fear factor somewhat. Just search for his name and you should be able to find them.
Any questions, just ask.

Thankyou so much for your help. Yes I have a great gp. I mentioned possibly having vm to him yesterday. He wasn’t totally convinced but said it was possible. He said if I wanted I could try a migraine preventative. I started pizofen 0.5mg last night. 1 tablet at night to start If not helping 2 tablets. If not helping 3 tablets. Fingers crossed x

Thankyou so much for your help. Yes I have a great gp. I mentioned possibly having vm to him yesterday. He wasn’t totally convinced but said it was possible. He said if I wanted I could try a migraine preventative. I started pizofen 0.5mg last night. 1 tablet at night to start If not helping 2 tablets. If not helping 3 tablets. Fingers crossed x

Fantastic, sounds like you’re on the right track. Pizotifen has worked for many on this forum. I would suggest upping your dose slowly (ie take a couple of weeks or more at each dose before increasing to the next dose). In my experience, this helps to minimize side effects and helps your body adjust. Although some people feel benefits immediately from meds, most take a while to feel any improvement, so don’t feel disheartened if you don’t feel anything right away. Improvements can be gradual and take time. And if after a decent trial this one does nothing for you, there are plenty of other medication options available.
Best of luck. Let us know what your neurologist says in May.

Thanks so much. Just listened to the audio of dr Silver. Really interesting. Is he able to be seen in his practice? X

Also could you please help me ? I’ve lost the link I found for the audio of dr silvers talk about migraine. Id like to listen again. Is there a link you could find pls? X

I think you’ll find all the audio presentations here: viewforum.php?f=35 (paste that into your browser; they are all under Board Index/Audio, Video & Presentations.
Quite a few UK residents on this board do see Dr Silver – he is definitely available for consultation. If I lived in the UK I’d make every effort to see him:)
I’m not sued of his contact details, but I’m sure if you google him or ask on this board you’ll find them.

That should be, ‘I’m not sure of his contact details…’ :slight_smile:

Thankyou. You’ve been so helpful x